How do you reach those that need help the most?
A better question may be: how do you reach those same people when they have no idea where or what that help is, or that it could help them in a meaningful way?
When I say "help", I'm not referring to therapy (in the conventional sense) or rehabilitation. I'm thinking of the people out there who live their lives with diabetes, yet without an awareness of how much lighter that burden could be.
Over the last year, I've had the opportunity to read and interact with a variety of views on how living with diabetes affects people. I see accounts from people of all varieties, in all walks and stages of life. I see the good, the bad, and the very ugly. Because I'm a responder for an online diabetes support resource, I interact with some of the concerning, devastating and sometimes heart-wrenching situations that are only shared under conditions that ensure the comforts afforded by anonymity and confidentiality.
For those same reasons, I can't say exactly what I've been alerted to recently.
What I can say is that my heart feels heavier today.
A family member of someone with type 1 diabetes contacted me recently. The T1 is experiencing a lot of the burnout, frustration, complacence and outright depression that so many of us have faced. Reading through this email with blurry eyes, it felt as though I was reading what someone could have written about me ten years ago, with a few different dramatic twists.
These aren't new issues to our online community - they happen. But when they do, we rally. We sympathize. We relate. We check in. We motivate, and we encourage, and we support.
We do this as a community because we all know the power of what this brilliant sum of kind hearts and strong voices can do. It's what we're good at, frankly.
But how do we reach the ones outside of our mostly-well-adjusted bubble? How do we reach those who need us in ways they may not even realize right now? The ones who may be resistant to accept any kind of help?
How do we reach the unreachable?
My imagination likes to write its own stories. (Maybe you've noticed.) I often envision these folks as living in some sort of alternate yet parallel version of themselves - of the person they could be. As the saying goes, "they don't know what they're missing". I can remember what it's like to be that version of yourself; the lonely frustration coupled with a bit of self-reliant defiance. Me, need help? Oh no, no. I've been doing this for ____ years. I don't need "help". It sucks, but I'm doing the best I can with it.
In fact, that version of myself might be a little pissed at me for writing this, and for insinuating that she didn't have herself as together as she thinks. She's be a little put-off by the fact that I claim to know what she's going through - because no one gets what it's like.
I want to hang billboards for these people. I want to flood the airwaves with PSAs. I want a freaking Superbowl commercial. I want people in sandwich boards walking around the downtown of every city in the world. I want people in chicken suits. I want blimps at sporting events. I want a sheet with online resources shoved into every damn test strip box on the market right now.
And I want to give all of these people a huge hug, without me looking like a totally crazy idiot.
That last part might be totally unavoidable, but I'm willing to take that risk considering the potential payoff.
This Sister- and Brotherhood of the People With a Broken Pancreas - we have an amazing ability to help people live better by being open and honest about life with diabetes, and there are so many more that can be brought into the fold. We ourselves are proof of the power that community has, because of the changes we've seen it bring to our own lives. We have all felt that void - or recognized its existence only after having brought to light and sealed up - before.
Let's find a way to share this, folks. We need more rooftops to shout from.
This is an amazing post. Your idea about a notice inside boxes of test strips is a very good and practical one. I imagine if enough of us contact our test strip companies it could be possible. It would be a start.ReplyDelete
So true Kim! Any ideas? Information to Endos? What? I am game.ReplyDelete
About 10-15 years ago, when I wasn't managing my diabetes, I would periodically look for something online. Of course, the DOC as we know it didn't exist, so I can only talk about how I responded to what did exist at that time, which was various groups, message boards, listservs, etc. Anyway, I would try to engage, but I'd find people who clearly had a very different relationship to their diabetes than I did. It made me feel more alienated, like no one there could really "get" what I was experiencing, and that had I shared everything I was trying to overcome (never doing BG checks, taking a fraction of my insulin, amongst other things), I would get lectured by some well-intended individual about my eyes and my kidneys, blah, blah, blah.ReplyDelete
I think there are some people who qualify as "unreachable" as you've described it who might actually be reachable, although I'm not sure how to accomplish that. Unfortunately, when I think of the "unreachable", I think of versions of what I once was, people who see A1c's that are half of their A1c's, and feel completely disconnected from anything positive we say about diabetes, even if they can relate to some of the negative. However, if the negative is complaining about the ups and downs of managing diabetes, they wouldn't even necessarily relate to that. To me, it feels analogous to two people who each speak different languages. They do have commonalities, but figuring out how to identify them and relate and draw each other into a dialogue feels next to impossible. Even if one is committed to connecting, the other gets frustrated and gives up.
Anyway, I think I sound really negative, but that's not exactly what I meant my response to be. It just made me think about how I was once unreachable, and had the DOC as we know it existed, I'm not sure that I could have even engaged because I really was that unreachable. So reading this made me sad for those people, and in all honesty, not sure that there's much we can do to help them... until they're ready to be reached.
i think you're amazing. i will do whatever i can to share and spread the word the DOC is out there. sometimes it just takes one person to start the flame and the idea will spread like wildfire.ReplyDelete
here we go :o)
Best. Post. Ever.ReplyDelete
To me, this is the great problem facing that DOC as a whole: how to make things a little better for those who don't - or can't - participate with us online.ReplyDelete
To Lee Ann's point: part of what we can do to avoid alienating the struggling is to tell the truth, because most of us struggle in one way or another. (I think we're actually pretty good at this, on the whole.) My numbers are pretty good, but I fight with depression, and awful lose. And, I am mostly unsuccessful thus far in making the whole eat-less-move-more lifestyle change.
Amen! Itll be a year since I found the DOC in April and now I dont know how I managed without you all.ReplyDelete
Somethings gotta be done.
You have a beautiful way of writing, Kim. ...This all sounds so difficult, so heart-wrenching, and yet so eerily familiar. It is why I started my blog a few weeks ago. I have no idea the exact circumstances in reference here, but I--like all of us--know what it's like to be in that tunnel and not be able to see any light ...and when we do think we've seen some light in those dark places...when we've run so far in the opposite direction from 'health, wellness, & D-management' because of burnout, depression, or what have you... we realize that light we are seeing is really an oncoming train --and we can't turn back fast enough.ReplyDelete
We all struggle at times, but things like the DOC, a good endo and CDE, and other support both online and in person really can make all the difference.
Thanks for posting this!
Wow! This is fascinating! The post AND the comments. Great idea!ReplyDelete
Outstanding post, Kim. You are so right: this is a gap that needs attention, but the challenge is finding out how to do that. Among our collective minds, I'm sure we can come with some ideas - and likely many many more cupcake recipes and Corgi bark parties.ReplyDelete
Another thought, after reading Lee Ann's comment again: She's right in that we have different mindsets within the community, and some just don't want to be reached. You even hint at a low A1c or managing your own, and that turns off those who aren't testing but have been doing it long enough to know. I think we can get to those, by staying away from the high-horse preaching to the choir and hitting on more of the depression/teens/20s stages that I'd guess are most likely to go through this the most. There's got to be a good way to do this while avoding the "i'm going to improve you" mantra that might put some off...ReplyDelete
Lets find away to reach some more people. Would it be possible for some of your DOC peers and yourself to create a flyer that listed some of the best online resources for any one with the D. If you guys could do that and somehow create a PDF file that your blog readers could click on then we take the fliers to the endo and ask them to post in the exam rooms. No advertising no other motives but to reach out to more people.
I would totally take it to my endo, and ask her to post it next to the cartoon of the guy checking his feet and the lady sweating that reminds us to exercise more. What are your thoughts???
I managed my D for 17 years pretty much w/ no emotional support from anyone. But since I found the DOC it has really inspired me to look at my D differently.
Jason in Orlando
What a beautiful, caring post!ReplyDelete
Reaching out to other diabetics is very hard when the professional associations control all the channels of communication. I've seen too many people who say "I'm doing what my doctor tells me to" and close the discussion, even when the doctor's advice is old-fashioned and incompetent. It's like you can lead a horse to water, but you can't make them drink. And I have no good answer for that.
I found you through the blogger basal! I am a D Mama blogger. My son was dx 11/2008 at 27 months old.
I can so relate to what you are writing about here! I know someone who is an adult T1. She, like my son, was dx at 2 yrs old. She is now, just a little younger than me... and has kids of her own. She would benefit so much from some of what is out there to lift her burden with D. But she very much has the "Me, need help? Oh no, no. I've been doing this for ____ years. I don't need "help". It sucks, but I'm doing the best I can with it." point of view you mentioned.